Category Archives: mental health

The OT

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Yesterday was D’s long-awaited trip to the occupational therapist. I say long-awaited as it was last June the whole process began to get him looked at after the school thought it would be a good idea because of his wonky fingers – which have since been diagnosed as hyper mobility.

His appointment was after lunch, so he had the morning at school, and wasn’t too happy at that prospect! I think the thought of seeing yet another new person to prod him about was worrying him ever so slightly. He was fine though when I picked him up, and despite the rain, we went to have a picnic with Hubby – he works in a building right next door to the hospital.

As the time of the appointment approached, he began to ask what they would be doing to him – I of course couldn’t give him an exact answer, just that it was to try to get him some help for his hands because of his funny joints. He was happy with that explanation.

We were a little early and he was happy to play a few races on the Mario Kart wii game in the waiting room, but held tight to my hand once his name was called.

The occupational therapist was only about 12 – I think that is a real sign I am getting old when everyone seems to be so much younger than me!, but she was very pleasant, and spoke to D, only including me in the questions when he wasn’t being responsive. When asked if he knew why he was there he said “because I can do this”, and proceeded to do his party piece of bending his fingers the wrong way – makes my stomach churn every time he does it!

There was a second OT in the room, observing from behind, and making notes. It was a huge room and we were sat in the corner, and I don’t know about D but it did feel intimidating being observed from both sides!

Firstly they had him doing some writing, as this is our major concern. His school work suffers because he finds holding pencils so painful. We have tried different styles of grips, as has his teacher, so he was showing the OT which ones he had used in her huge array of different styles. She had him choose his favourite and set him about writing his name a few times. As usual he was gripping his pencil so hard his fingers were turning white, and his pressure was causing the paper to go through. Seeing him do this, it is amazing the things you just accept and not realise they are a little out of the ordinary! She then gave him a sloping board to use, it meant that not just the angle of his hand changed, but that of his whole body as he had to improve his posture to use it! Straight away, the writing he did was much less pushed through the paper. They decided he should be given a board to take to school to use.

He then had to demonstrate his use of scissors, which is something he usually looks so dangerous doing as he fumbles with, but instead today, he was cutting very patiently, and looked as if he had no problem there.    He so wants to please people that he made sure he did what he was asked to do, even though it was at half the speed and potentially painful.

Using cutlery has always been an issue for him, and he much prefers to use his hands.  We have not been sure if this is because of his fingers, or a sensory thing to do with his aspergers. They tried him with various styles of cutlery, having him cut up play-doh sausages, and he said it was easier with proper ones. I do think it was more a case of the chunky handles looked like ones he had when he was just starting to learn to use them so he didn’t want “baby things”. He was told to remember to make sure his hands were in the correct position – which he was shown, and then cutting would be much easier for him.

He then was shown an easier way to tie his shoe laces.   When we have tried  before,  he has ended up saying his hands are sore from trying – never convinced if its a reason or an excuse.    This way was much easier, and we will definitely be practicing with this – if he can master laces it will be so much easier to get shoes that will fit his ridiculously wide feet.

Then came buttons.     Large ones he was fine with on a garment on the table in front of him, but as soon as it got to smaller ones he was fumbling.     It was suggested a way to make it easier was to replace the tread with elastic so the button moves more to get it through the hole, so I might have to get Old person on a sewing task!    Another idea was that he always did his buttons in front of a mirror so he could actually see what he was doing – painfully simple but something we had not thought to try!

He was then taken to the matted area to test his core strength, because of his clumsiness.    His balance was dire – which I knew it would be.    I did have to remind her it was just 8 weeks since his knee op as he looked in pain as he was asked to go onto all fours!        It was suggested that he had additional sessions which are about core strengthening.     I think it will be really good for him, so readily agreed to that.     She had him trying to walk along a line on the floor, going toe to heel.   It was one of the funniest things I’ve seen in a long time as his feet were nowhere near the line however hard he tried!

They had seen enough, and decided to summarize what had been seen.

They said he needs to slow down when doing tasks – I didn’t laugh out loud at this but D doesn’t do slow, once his brain gets going, his body just has to keep up or we go into meltdown.     Their reasoning is that if he thinks more about doing things correctly it will help his body know what it should be doing.   Great theory which we will try to implement.

Then came the bomb shell.    They think its important he learns to type as the more writing he does at school the more pain he will be in!      I asked about exercises that might help strengthening his hands, and basically they said that just keep using them!     We were given a pile of handouts about tasks and games that were good for honing fine motor skills, we will defiantly be having a go at some of them.

So how do I feel now.     As usual, you come out of these thing feeling as if you are a failure as a parent.    It is nobodies fault, just the nature of sessions where strangers are telling you what you should be doing with your child, or what you have been doing wrong!      I do think its a positive getting the board to help with his writing – I did have a chuckle when thinking when I was at school, all desks were angled anyway!     I am upset that they feel becoming keyboard confident is a priority because they feel he wont improve his hand strength.      I think it is something we continue to work on in the home, and I will just keep making the play-doh for him to spend hours squeezing to try to strengthen those muscles.    The core building sessions sound as if they will be good for him, and if he can strengthen his core it has to be good for his legs.

For now though, it’s another box ticked and we move on.

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Depressed Little Aspie.

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D has been through an awful lot in the last few weeks.      In fact it seems hard to believe it is only two weeks since his operation to insert plates into his knees.      He has come a long way in such a short space of time.     D has always been a get your head down and get on with it sort of person, and so while he shows great emotion when he is having meltdown, he finds it really difficult to express how he is actually feeling for the large majority of the time.

While he was in hospital, I realised I often forget he is just six years old.     He has such a grown up manner about him that he often seems wise beyond his years.   However last week watching my scared wee man holding so tightly to his teddy bear, it was obvious that he is still a baby and we need to probably remember that a little more often.

He went through the whole range of emotions while in his hospital bed.    He was scared as anything before the op, but that soon gave way to the anger afterwards.    He was angry because even though he had been told the op was a long-term solution to straightening his legs and easing the pain, he had convinced himself that he would come out of the theatre and his legs would work fine and he would be off running around.     Of course, this just wasn’t the case.      He was angry at me because he was in pain.   He was angry at the pysios for making him move when it hurt.   Most of all though he was angry at himself for not being able to jump up and go.     D is such a perfectionist that he only has two levels of achievement in almost everything he does in life, and that is that he is brilliant or rubbish, and it doesn’t matter how much you tell him about the grey area between those extremes, where most of us are, he just doesn’t want to see it.     He therefore became very dark while on the ward.     I do however think this did spark his stubbornness into action and on day 5 spurred him to come to the decision if he wanted home, then he had to make the choice to walk.    Once he had his head in the zone, his body soon got the idea, and he was up and about.

Getting home helped him realise life would return to normal.    With his crutches he was getting around the house nicely, and he soon made the decision to try walking without them.   While in the house that was great, as he had lots around him to grab hold of when his balance got the better of him.    He wasn’t making progress as quickly as he wanted and while it was just a week from the op, he was very angry with himself for not getting about better.    I was really impressed with his range of movement, but for him it just wasn’t quick enough.      He started going off into his own little world, which is nothing new for him, but just staring into space was not something he has ever done before.    When asked if he was alright, he would just shrug his shoulders.      Then just after putting him to bed, the tears would start.   He would cry and cry, totally uncontrollably.    He said he didn’t know why, and that he just felt like crying!     With all he had been through I wasn’t surprised he needed to just let it all out.

The physio was really happy with his progress, and while she said to continue using the crutches, she was happy for him to go without them as much as he felt comfortable.     I think he thought she would take them away and say he didn’t need them anymore and so he was a little put out.       When she said she wanted to refer him to the nutritionist, it was both him and me that were upset as he is very aware he is a big lad – the bullies have made sure of that, and we have seen these people before with their only advice being not to feed him until he’s grown a bit – and of course accusing us of lying when we say we do low-fat, low sugar as much as possible!

The week progressed and his mood didn’t lift, but he was trying really hard to get about as much as possible.   Both boys started scraping with each other, so some form of normality was returning to the house.    D though was still drifting in and out of his dark place.

Today he went back to school.   He was not convinced he was ready, but I was!   He hasn’t been to school in almost a month with the holidays before he went into hospital.     I think getting back to his regular routine can only help his mental state.     I drove to school this morning, something I don’t like doing as it’s just a 5 minute walk, but it’s all up hill, and for his first day back, I think his energy will be used through the day.      He was worried about getting to his classroom, as it is upstairs, so I took him in on first bell, and his minder – his little girlfriend who has promised to keep an eye on him, came in too.   He took his time, and got to his classroom.    His teacher asked how he was getting on, and agreed if he didn’t want to do the playground at lunchtime then they would find him something to do inside.       I said just take the lead from him, and I’m sure she will push him as far as possible without making him do more than he is capable of.

I think he will be exhausted tonight, but hopefully seeing his friends and of course getting the sympathy from his harem of girls will boost his mood and get him back on an even keel mentally.

As a parent it is so difficult to see your child hurting but when it is mental hurting then it is more difficult as they cant articulate what is going on in their heads.     He has been through so much that I am not surprised he has crawled inside his head on more than one occasion in the last two weeks, but we have to pull him out of the darkness and back to the light for his own good.   I think getting back to routine will help with that.

Preparing for hospital.

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Tomorrow is the day we have been waiting for what seems forever, when in fact it is only a few months, but D finally goes into hospital to get his knees pinned. We are hoping this will help with the pain and discomfort he experiences with every step he takes – not that he complains – often, or does he let it stop him doing most of the things he wants to do. He is imagining this will be a miracle cure, where we have tried to explain to him that this is only the first stage of getting better mobility, and it will take time and a lot of physio before he is running around like he wants to do. We haven’t dared to talk to him about the follow-up op in two years to remove the pins, but that’s a conversation for another time!

To be honest, at the moment, he seems to be taking it really well. He is almost excited about going into hospital. His best friend has spent a lot of time in hospital, so he and has Mum having being telling D about all the fun things that he got up to when he broke his leg – an accident falling off a scooter in the nursery. I imagine as today progresses D will be getting more apprehensive about the whole thing, but we will try to keep him up beat. Hubby has taken the boys to his Mums so that has at least occupied him for the time being.

Getting rid of the boys has meant I have had a chance to get organised for tomorrow and the days that follow it. There are the obvious things, like packing bags, and organising books, and things to take in for him – and me. His teacher has given him some work to do while he is off, if he felt up to it. He was so excited by this that he actually wanted to started it when he got home from school on Friday – I certainly have a conscientious kid! So that is ready to go. Hubby has organised D’s tablet so he has the games he plays most often on there, as well as a couple of his favourite films. I think we have sorted out enough stuff for a six months stay!

Then there are the less obvious things that I have been sorting out this morning. The washing is up to date, including his best buddy – Willie Bear, who will be going with him to hospital – apparently he also has dodgy knees!  The house has been cleaned. Yesterday I striped the cushion covers off the sofa and washed them, just in case D wasn’t able to do the stairs when he got home, and needed to sleep downstairs. So the house is spick and span – or as much as it ever is. I have also cleaned and tidied the kitchen. Now this might not seem a huge priority, but it Hubby can’t find what he is looking for easily, then they will be living on takeaway for however long we are away!    I have moved things in the freezer so they are no longer in the logical place, but in a place were Hubby can open the door and the likes of bacon or sausages will almost jump out at him!

Now I know I am over thinking this, and imaging the place will fall apart with out me for a few day, but having spent the last month trying to return the house to an even keel after my stay in hospital, I know what these folks are like with things!

They have enough food for the week, so there will be no need to worry about shopping – but I probably haven’t bought enough crisps and snacks to satisfy Hubby and M!!

Hopefully we will only be away for a few days, but you never know with these things.    They say D’s road to recovery is all down to the physio, so it is her he has to show that he can do this.    He is desperate to get onto crutches, so hopefully that mental attitude will stay with him once he actually needs it – although I am concerned that his weak painful wrists might mean they have to think again about that one!

Tomorrow is a long way off in terms of keeping him happy and in the right place mentally.    This evening we will watch some videos about the anesthetic, which are aimed at helping the kids have a better understanding of what will be happening to them.

For now though he is happy with what will be happening tomorrow.    M on the other hand is so worried about his brother that it is beautiful to see.   We have a little boy who is gushing over a brother he claims to hate.   Its lovely.     Hubby will talk to M’s teacher in the morning to explain what is going on, just to warn her that his behaviour might be a little out of sorts.    If he really isn’t coping then we will have to evaluate things, but I suspect once he has seen D has come through the op in one piece he will go back to hating him again!

Now, there must be something I have forgotten to organise!!!